While MPN are considered rare or “orphan” diseases, they afflict people all around the world. Here are foundations and patient resources beyond the United States.
ON-LINE PATIENT-TO-PATIENT COMMUNITIES
Thanks to technology, MPN patients and care givers can connect with others around the world. These resources have participants from most every continent.
MPN-NET: http://listserv.acor.org subscribe (it’s free!) with email to listserv@listserv.acor.org
Discussions include patient experiences, psychosocial issues, new research, clinical trials, and discussions of current treatment practices and alternatives. The principal focus is expected to be information and reassurance for patients and loved ones.
Facebook MPN Groups & Pages
There are numerous groups on Facebook. Some are “open” and others are “closed” (you request access and be approved by an administrator).
Each group has its own culture and groundrules. They are administered by patients or care givers of MPN patients. They tend to have a certain topical focus, and many of us participate in several groups.
Most groups are “closed” to protect the discussions from showing up on newsfeeds, getting personal information shared with marketers, etc.
A Friendly Note about Facebook and Social Media:
Some people have created a Facebook account with a pseudonym for the purpose of maintaining some privacy. Some people have done so for more nefarious purposes (collecting patient data without consent, selling, spam). So if you do so and request to join a group, consider informing the administrator so they will favorably consider your request.
ORGANIZATIONS OUTSIDE THE UNITED STATES
AUSTRALIA
MPD-OZ http://mpd-oz.org email: info@mpd-oz.org (Ken Young)
Leukemia Foundation http://www.leukaemia.org.au/blood-cancers/blood-cancer-support-and-advice
Funds research and provides free services and support to people with Leukaemia, Lymphoma, Myeloma, MPN, MDS, and related blood disorders.
MPN Alliance Australia Contact: Jolanda Visser mpnaa.jolanda@gmail.com
AZERBAIJAN
Fighting Leukemia Public Union Contact: Baghirova Mehriban: mehriban63@mail.ru
BELGIUM
MPN Belgium vzw www.mpnbelgium.org Contact: Ilse Jans info@mpnbelgium.org
Association ALTE-SMP (French) http://alte-smp.org Contact: Philip Ciesla cieslaphilip@hotmail.com
BRAZIL
ABRALE – Brazilian Lymphoma & Leukemia Society www.abrale.org.br Contact: Fernanda de Carvalho Geiger Fernanda@abrale.org.br
CANADA
Canadian MPN Network http://www.canadianmpnnetwork.ca email: canadianmpnnetwork@gmail.com Toll Free : 844-644-6766
British Columbia: Vancouver Contact: Mark Williams mark.mpn.vancouver@gmail.com
Alberta: Edmonton Contact: Cheryl and Eugene Petruk canadianmpnnetwork@gmail.com
Saskatchewan No current group established Contact Alberta group
Manitoba No current group established Contact Alberta or Ontario group
Ontario: Hamilton Contact: John Clark jwclark@gmail.com
Toronto Contact: Kevin Brown kb@iconhomes.com
Kitchener/Waterloo Contact: Joanne McKinney JMcki99425@aol.com
Windsor Contact: Jane Fleming Janefleming62@gmail.com
Ottawa Contact: Phil Arner phil.arner@rogers.com
Quebec Contact: Cheryl Petruk canadianmpnnetwork@gmail.com
Newfoundland and Atlantic Provinces Contact: Simon Lono simonlono@gmail.com
CHILE
The Max Foundation www.themaxfoundation.org
MPN Support Program: Day by Day Contact: Lyat Granati Espinosa Lyat.granati@themaxfoundation.org
DENMARK
Danish MPN Patient Organization Contact: John Jensen: johnilsoejensen@webspeed.dk
Facebook page:
ENGLAND/UK
MPN Voice www.mpdvoice.org.uk/ MPN Voice is a UK based web site and team that provides information and support to those diagnosed with a myeloproliferative neoplasm (MPN). MPN Voice has members across the UK and worldwide. It organises regional patient forums in the UK and co-ordinates a Peer Support programme to allow people with MPNs to contact other more experienced patients.
FINLAND
Association of Cancer Patients in Finland http://www.syopapotilaat.fi/ Contact: Minna Anttonen Minna.anttonen@syopapotilaat.fi
FRANCE
Association ALTE-SMP http://alte-smp.org
GERMANY
MPN-Netzwerk, eV www.mpn-netzwerk.de
Contact: Rainer Kuhlmann r.kuhlmann@mpn-netzwerk.de
Contact: Werner Zinkand w.zinkand@mpn-netzwerk.de
HUNGARY
MOHA – Foundation for Hungarian Oncohaematological Patients www.onkohemat.hu Contact: Ibolya Kéri moha@onkohemat.hu
IRELAND
National Cancer Registry Ireland http://www.ncri.ie/
ISRAEL
The Flute of Light Contact: Erez Rasilevski Erez.rasi@gmail.com
MPN Advocates Network Contact: Robert Zelig fridarobi@gmail.com
ITALY
Gruppo AIL Pazienti MMP Ph- (AIL MPN Patient Group) Contact: Massimiliano Donato ailpazienti@ail.it
AIPAMM – Ares Roma www.aipamm.it Contact: Peter Lercher peterlercher@aipamm-aresroma.it
JAPAN
MPN-Japan http://mpn-japan.org http://facebook.com/mpnjapan
Contact: Kaori Taki mpn_japan@yahoo.co.jp
REPUBLIC OF KOREA
Korea Blood Cancer Association Contact: 김민정 Min Jeong Kim hopecenter@hanmail.net
MACEDONIA
BORKA – For Each New Day www.borka.org.mk Contact: Mirjana Babamova Mirjana.babamova@borka.org.mk
NETHERLANDS
MPN Stichting http://www.mpn-stichting.nl
NORWAY
Landsverk Norwegian Blood Cancer Contact: Inger Margrethe Inger.Landsverk@mimer.no
PORTUGAL
APCL Associação Portuguesa Contra a Leucemia www.apcl.pt
Contact: Lara Cunha laracunha@apcl.pt
SERBIA
UMF Association Association for help to patients with Myelofibrosis
Contacts: Sanja Kotur and Jelena Lamovec udruzenjemijelofibroze@yahoo.com
SLOVAKIA
Association of Patients with Haematological Malignancies http://www.hematologickypacient.sk
This is a citizen’s association to actively represent and promote interests of patients with haematological cancer-related diseases in exercising their right to health care leading to the prolongation of life and improvement of its quality. Provides free legal advice, patient education and support.
Contact: Katarína Fedorová Katarina1.federova@gmail.com
SLOVENIA
Slovenian Lymphoma and Leukemia Patient Association, L&L www.limfom-levkemija.org www.majboljsanovica.si
Contact: limfom.levkemija@gmail.com
Contact: Kristina Modic Modic.kristina@gmail.com
SPAIN
AEAL – Association for Lymphoma, Myeloma, and Leukemia patients. www.aeal.sp
http://www.aeal.es/sindromes-mieloproliferativos-espana/
Contact: Paloma Hernández secretaria@aeal.es
SWEDEN
Blodcancerförbundet www.blodcancerförbundet.se Contact: Lise-lott Eriksson Lise-lott@blodcancerforbundet.se
SWITZERLAND
MPN Patient Support Association Switzerland Contact: Peter Löffelhardt pelo.globe@gmail.com
UNITED KINGDOM
MPN Voice www.mpnvoice.org Contact: Jon Mathias, Chairman Jon.mathias@iname.com
If you know of other great patient resources, pass them along to us at mpnbuddies@gmail.com
